Amazingly enough, I have had a few requests for the sheet music for this song I wrote. I have finally figured out how to accomplish that using a combination of Band in a Box and Photoshop. Please feel free to sing my song whenever the spirit moves you. (I’m sure you can improve on my rendition.) Of course, I am reserving the rights for any recorded or published versions of my song. Cick on each thumbnail to bring up that page of the song.
If you have trouble downloading the files, send me an email (mike@lifedisabled.com) and I’ll send them to you as an attachment.
Apr 222013
Nov 092012
A visual snapshot of Beth's life.
The places we went, the love we shared, the friends we made, the children we raised …
Our favorite things to do together were traveling and throwing parties. I always suspected that both were just excuses for a new wardrobe, but as beautiful as she was who could possibly say no?
We would travel by car usually. I liked to drive and she liked to sleep. Once in a while she would wake up long enough to see something along the way. When we returned, Beth would take those visual memories and turn them into incredible works of art. One was Maui jungle, where she managed to distill a week of driving around the island onto a 2″ x 3″ piece of zinc. That image won major awards and the edition of prints sold out.
When I was forced to retire due to my disability, I took up painting as well and we enjoyed our trips even more. We would come home to our studio and commit memories to paint and paper. This was a very happy time. But then I became even more disabled to the point where we could no longer be away from home at night. Beth began losing her eyesight and was diagnosed with her own physically disabling disease.
For a while, we continued to paint, drawing upon the memories of previous journeys. But for the past 2 years, painting simply stopped. Beth couldn’t see well enough and I couldn’t move my hands well enough and the focus of our lives turned to helping each other get by.
And now Beth is gone. But she is still helping me get by. Because she has left me with a lifetime of beautiful memories.
Her loss gives me great pain, but it is a small price to pay for the richness that she has left behind. Beth, I will always love you and I will forever thank you, for having been my wife.
Oct 142012
Beth at an art reception last year.
So we talked with her as her body struggled. She managed one-syllable answers and at one point opened her eyes and squeezed my hand. Then our daughters arrived and we gathered around and told Beth how much we loved her (although there really were no words that could possibly say how very much that was).
Each summer Beth and our daughters would stay at the beach in La Jolla for a couple of glorious weeks.
The doctor gave her pain killer and a sedative, then removed the mask. We held Beth and continued to talk with her as she struggled to breathe on her own. All too soon, she took her last breath and I felt her fingers relax their hold on mine. My wife, my soulmate, the mother of our children, was gone.
As I write this, there is no way to describe the agony. If I could, I would change places with her in an instant, but I can’t. Somehow I have to make sense of a life that doesn’t include Beth and try to use the time I have left to continue to write and help the world know more about the wonderful woman it has lost.
One of Beth's last works of art, Spring Ahead won many awards and now hangs in my room.
There is downsizing, and then there is moving to assisted living. Downsizing presents difficult choices of what to keep and what to take with you. Moving to assisted living presents impossible choices.
One way we managed to deal with it was to simply not make many of the decisions. Instead we had our daughters go through our stuff and make a lot of the choices for us, without us being present. Did we agree with every choice? Of course not. But it at least it let us whittle things down to a manageable size.
Another way to approach it is to choose between what you really need and what you think you simply can’t live without. In my case, since I knew I was going to continue to do work in the website design and graphics arts field, I definitely had to take all of my computer gear and cameras. Plus my manuals on software and programming. Beth wanted all of her art supplies, of course.
How do you downsize this?
Beth wanted to bring enough to fill several closets so we compromised by storing winter clothes off site and bringing all of her summer clothes. Then we will have to make the switch in the fall and hope we guess right on the weather. I also gave her half of my closet for coats.
Then there are the keepsakes. How could we possibly get rid of any of the vases that people had given us over the years? Well we had to, and every few days we will remember one that would’ve been just perfect for a particular location or occasion. The other really big issue was Christmas decorations. We have been allowed to store some here underneath the facility in their basement, but that still begs the question of what we will do with them come holidays. Perhaps we will be able to use some in a common area here at Huntington Manor.
It’s my belief that the key to this whole process is to try your best to live in the present. Every time we start thinking about things we left behind it becomes difficult. But in truth, nothing we left behind is needed for our daily lives. And the real memories aren’t stored in vases or garment bags. They are in the mind.
Which reminds me to return to working on my first book, “The Society of the Creek.” It is a book about childhood, written for an adult audience. I plan to post some excerpts here.
The owner of Huntington Manor was willing to have my ceiling lift installed.
We did a CANHR (California Advocates for Nursing Home Reform) search and it yielded nearly 700 facilities just for San Diego County. Most are converted single-family homes where they are able to keep six residents, two to a bedroom. Small facilities such as this do not have as restrictive licensing requirements as larger ones and they may be less expensive. For many people this might be a good alternative, however for us they were not appropriate.
Every few days, before signing a contract, I would roll into the Huntington Manor dining room unannounced.
There are several large assisted living facilities in the county, but they have fire code restrictions that prevent them from accepting non ambulatory residents. Most have associated skilled nursing facilities which is where they suggested I stay, but that would totally restrict my freedom and be very expensive. Also, because our needs were different, the large facilities planned to put my wife and I into two separate buildings.
After eliminating hundreds of facilities, we came upon Huntington Manor, just five miles east, in Poway, California. At 27 residents it was neither large nor small, which for our needs was just right. It came with good online recommendations and had beautiful surroundings. What really caught my eye was their statement that they accepted nonambulatory patients. Huntington Manor specializes in caring for the frail elderly and has done all of the necessary legal groundwork to be able to accept up to 21 residents who are unable to bear weight. Also, for the first time, I found a facility owner who was willing, even eager, to let me install an overhead lift system in my room.
I stopped by several times, unannounced, to observe the staff and sample the food (friendly, delicious).
With plates like this, Huntington Manor passed the taste test.
Price was an issue of course and although Huntington Manor was less expensive than some of the very large facilities, it is still more than we can afford indefinitely. Eventually we will need to sell our home and after that within a few years we’ll need to find some other living arrangement.
In the meantime I am looking for additional sources of income. (Any potential sponsors for this blog site, please take note.)
With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.
Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.
The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.
But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.
I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.
Jan 132011
My iPad has allowed me to resume sketching (in preparation for painting) even though I can no longer use a drawing pencil.
But that is not what originally caused me to purchase an iPad. That happened last year when I was planning to take a watercolor workshop and realized that my weak fingers would no longer allow me to do planning sketches in preparation for painting.
I had already tried a drawing tablet that connects to my computer. I found it very difficult to use since you needed to hold the stylus over to the side of your computer while looking straight ahead at the screen. This didn’t lend itself to a very intuitive form of drawing, for me at least.
But when I saw that the iPad had a touchscreen and that it came with applications for creating art, I decided it was the solution. It turned out I was right, as I have been able to do a great deal of sketching using my iPad and a stylus.
Since then, I have discovered that the iPad is an ideal solution for people with physical disabilities. To begin with, it is very lightweight so I can carry it around with me wherever I go. The voice recognition is ideal for e-mail, Facebook postings, etc.
It is also a great way to take reading material with me as you can download books using either the Apple iBook’s store or the Amazon Kindle store or you can copy other documents that you have into the iPad for reading wherever you happen to be.
It is a highly portable computer, a library, a music studio, a weather station, a radio, a movie theater, a bus or travel planner, and the list goes on. In fact there are now millions of little applications designed for use on the iPad many of which are idel for the physically disabled. Just recently I used its inclinometer to determine that our community’s sidewalks had driveway openings too steep for wheelchairs or scooters to safely cross.
I will talk about many of these areas in future posts. But in the meantime I encourage everyone reading this to at least investigate the iPad for your own use.
Oct 092010
Why was my life's script being written in code?
The job consisted of finding a different paintout location for each week, making sure it had adequate free parking, restroom facilities, and subject matter worth painting, and then handing out a sheet listing locations for the next few months to the group.
From plein air painter to php programmer, now that's a rewrite!
About this time I joined the San Diego Watercolor Society (SDWS) and I was asked to become part of their Board of Directors in charge of Membership. Naturally I developed my own database solution for that job, since it involves keeping track of more than 750 members. I found this volunteer work to be very rewarding and continued to take on new tasks until eventually I became President of SDWS. Along the way I had been developing database solutions for a variety of needs, including staffing the gallery, monthly member shows and our annual International Exhibition. Eventually I realized I could save a lot of our volunteers time if they did not have to type in all of the information in the database. We already had a website, so I converted it into a dynamic site, using PHP and a Filemaker Pro database. This meant I needed to learn PHP programming and how to interface with the database on a website. It was a great challenge and I truly enjoyed it. I also enjoyed getting up (so to speak) in the morning and seeing true purpose in the way I would spend my day. You can see the results of my work at the SDWS Website.
After six years on the SDWS board, I “retired” and once again found myself at loose ends. But in the meantime, voice recognition technology was making great strides, and there was finally a good program for my Macintosh computer – MacSpeech Dictate. This meant I could think about writing again. Thus was born this blog site. And if people keep reading, I will keep writing!
Sep 112010
So, if my legs were too weak for golf or tennis, and my fingers were too weak for music or writing, what kind of future should I write for myself? I needed a challenge, and I needed an activity that could fill the days better than sitting around on a scooter or wheelchair.
While I was pondering this question, I could hear the music coming from my wife’s studio. She had a degree in art and was a lifelong artist and seemed to be having a really good time listening to music and creating beautiful works of art. Why not me?
Well, if I wanted a challenge, this was certainly going to be one. Because I had no art training whatsoever. A coworker had once looked at my attempts at sketches and declared that I had created a new form called “the opposite of art.” I couldn’t hold the brush firmly enough to make accurate marks, so any attempt at realism was out of the question.
Beyond Recuerdo was one of my early paintings.
However, I was intrigued by the difficulty and decided to give watercolor painting a try. At first I was very disappointed with the rough quality of my work. But then I would have artists come up to me and ask how I was accomplishing this style. Sometimes I would be honest and tell them that I really didn’t have any choice. They would smile and tell me how lucky I was.
What I didn’t realize at the time, was that so many artists struggle for years to “loosen up” after having received years of training directed toward accurate rendering of subject matter. I was able to simply skip that whole stage.
Morning Walk is a recent work, purchased by a fellow artist.
Lately, the weakness of my fingers has become so great that I can no longer legibly sign my name at the bottom of the painting and I am looking for a way around that problem. It is also taking my “loose” style to an extreme that I’m not sure I can tolerate. But I will keep trying anyway.
Somewhere along the way to becoming an artist, I discovered another way to challenge myself and to make my life more rewarding: volunteering. More about that in Act II, Scene II.